27/m/Barts. Now with added lymphoma

John vs. Cancer #9: Back on the Horse

***Previously on John vs. Cancer: whilst waiting to be saved from certain death by an autologous stem cell transplant, our hero got extremely fighty about his beloved NHS. He returns to this blog after an unprecedented two-month absence***

I’ve learnt a lot over the past six months, but there’s one piece of advice that I’m especially keen to share; when a doctor is drilling into your hip bone with a gigantic, bladed syringe, it’s an exceptionally bad idea to start murmuring a song with lyrics that sound in any way like an instruction. In my case, it was the 59th Street Bridge Song – a soothing number, sure, but one that would have caused a lot less trouble if I’d skipped straight to the second verse (which opens with the oblique but clearly not-actual-chat line “Hello, lamppost”).

Other life lessons I’ve internalised recently include ‘washing down chalky pills with wine makes the wine taste nasty’, ‘it doesn’t matter how nice your flat is, after six months of sick leave you’re going to want to set fire to it and move continents’, and that perennial favourite ‘if you neglect your cancer blog for too long, people start asking your mum if you’ve died’. Sorry, Friends Of My Mum. Next time you’re worried, check Twitter.

Eleven weeks of radio silence is a long time, mind, and I’ve had lots of plans to write a new blog – one for Christmas summing up the year, one for NYE with plans for 2016, one on the seximensiversary (!) of my initial admission (last Thursday) or my diagnosis (yesterday). The reason I haven’t is simple: I’ve had nothing to write. Long-memoried readers will recall that my last blog was written in the fun little 26-hour window between being fatally poisoned with mustard gas and given a literally lifesaving transfusion of my own stem cells, which took about forty-five minutes and involved huge needles, ‘CryoGloves’ and a terrifying wheely cauldron of dry ice and scarlet cellular matter, about three feet tall and looking for all the world as if a grenade had gone off inside R2D2 before Kenny Baker got out. This was the ‘autograft’, the first of two transplants that will hopefully effect a cure.

I’ve said before that the worst thing about being severely ill is the sitting about, and it’s never been truer than in the past couple of months. Like Homer Simpson waiting to pick up his gun as ducks, rabbits, Flanderses and Tom Petty taunt him from a safe distance, the first hundred days following my autograft – after which I’ll be able to have the all-important PET scan that determines my current closeness to death – seem to be stretching out into infinity. We’re currently on day 77, and if someone could arrange to slingshot me fowards in time by three and a half weeks I’d gladly trade them ten years down the line. (I obviously might not have ten years in the bank with which to honour this deal, but caveat emptor.)

Just as odd and discombobulating as the waiting itself, though, is the long process of adjusting to what Ella calls our ‘new normal’. I’m very slowly starting to work again, because it was that or go around setting fire to postboxes just for something to bloody do, and I’ve sadly accepted that if I drink beer on anything approaching an empty stomach, twenty to forty minutes later I will be very violently sick. I’ve got used to the pills I’ll be taking for at least the next year, the weird soft baby-hair that’s finally started to make its way out of my scalp, the very occasional walking stick. Most harrowing of all, I’ve got used to having a grown-up’s railcard, although that one isn’t strictly the lymphoma’s fault – it would much rather I’d checked out whilst my 16-25 card was valid.

And now, just as I’ve got used to being quietly at home, coping without the daily reassurance of blood tests and gradually weaning myself off Premium Creamed Potato, it’s time to remount the pale horse and head back to 5D. Back to Stew-on-the-Ward. Back to Cancerville. But for all that it’ll be hard to re-readjust, it’s going to be worth it. Yesterday I spent nine solid hours at Barts, and came away with the most concretely reassuring thing I’ve heard since last July: if these last two tests come out well, in two months’ time it’ll be full steam ahead with the donor transplant. A few days of immune suppression, a big glug of my sister’s stem cells, a dose of graft-versus-host disease as her white cells beat my ravaged body into submission, and then… that’s it. There’s about a ten per cent chance I’ll die, because these days I find things with no risk of death too boring to contemplate, but if I don’t die there’s a good chance I’ll be cured. Cured by the summer. Cancer-free just in time to get skin cancer or barbecue cancer or whatever it is people do when it’s hot.

That’s why, despite having previously said that “if anyone wants to cut into my bones for a third time they’ll have to kill me first”, this time yesterday I lay down like a good boy and let a charming registrar carve chunks out of my pelvis with her giant apple corer. I’d had an armful of Midazolam and an arseful of Lidocaine first, of course, but I was still EXTREMELY BRAVE and I’ll fight you if you say any different.

(I’d like to make it very clear that I was injected with Lidocaine in the general hip/arse area – the NHS frowns upon both anaesthetic suppositories and drug muling. Unfortunately, the apple corer still hurt like a bastard because, in the exquisitely tactful words of the registrar, “[my] hip bone is quite a long way from [my] skin”. I commend this turn of phrase to all doctors who need to stick sharp things into fat patients.)

So, that’s the big update. In three weeks or so we’ll find out whether my bone marrow remains clogged with evil lymphocytes, and a few days after that we should know whether my liver and spleen still glow like cancerous Christmas decorations when they get the rad-sugar treatment. If all’s well (and my consultant, whom God preserve, says he’s “very optimistic”) then we move into the final lap.

In conclusion: sorry about not blogging, but at least it wasn’t because I’m dead. I’m not dead. I may not even be dying.

***Next time on John vs. Cancer: your guess is as good as mine, guys. Maybe a Q&A? If there’s something you’d like better explained or an anecdote that you think I could tell in an even more self-aggrandising way, feel free to comment, email or (for preference) tweet.***

BUT WAIT, THERE’S MORE!

This is where I normally put the little blurb encouraging you to give to Anthony Nolan, which well over 4,400 of you have now done – thank you! (Can you believe we’ve raised ninety-two grand? Mental.) However, on this occasion I’m borrowing the space back for a fun, final bit of news that you may already have seen on Twitter and that didn’t fit into the blog proper. I’m thrilled to announce that Ella and I will be writing a book about what twats might be inclined to call our ‘cancer journey’. It’s being published by Picador, and all being well I imagine it’ll be out next year. Huge thanks to the thrice-blessed Daisy Parente, the justly exalted Francesca Main and everyone whose months of heartfelt support I will be cynically parlaying into jokes, and let no man say I haven’t made the absolute most of nearly dying.

Bloody good news. Must confess did wonder. Fingers crossed for a full blown happy ending. Perhaps the book could turn into a film. You played by that bloke who did Mr Darcy. – ah yes Colin Firth Herself by Emma Thompson. Good Luck Ian

So good to hear your positive words. Your girlfriend sounds like an amazing lady. Look forward to reading the book and seeing the movie! It will have to happen, as you said, there are no good, positive happy cancer movies. Let’s all hope yours is the story that changes everything. All the best to you both Sam X

So bloody pleased to hear you are doing well John, and lordy if anyone says the ‘journey’ word to me about cancer I want to gag up my lunch there and then. Bestest wishes to you and the beautiful Miss E x

I enjoy reading your blog. We have decided to forego the stem cell transplant in this house of cancer and let the HSTL run its course. I’m beginning to wonder if we made the right choice, given your outcome thus far?

I enjoy reading your blog and updates on your progress. We have decided to forego the stem cell transplant here in our house of cancer and let the HSTL run its course. I can’t help but wonder if we made the right decision, given your results. Rooting for you from the good ol USA!

Hoorah! How true the old adage “What doesn’t kill you only makes you stronger and potentially nets a well-deserved book deal”! This is excellent news and I suspect your story (only a journey if you’re on X-factor) will give comedy comfort to many. I hope you keep the tone as joyfully sweary and expletive-strewn as the blog / tweets and don’t water it down. I will be scouring the shelves for it next year and recommending it to patients. I think you must be very close to PET scan day by now so good luck.

[…] ***Previously on John vs. Cancer: having gone two months without blogging, being in hospital or feeling even remotely ill, our hero had a bit of a time finding something to write about. Today, and for the foreseeable future, he has no such problem.*** […]